In Whose Best Interests? Critiquing the “Family-as-Unit” Myth in Pediatric Ethics

Abstract

In pediatrics, parents are the presumed surrogate decision-makers for their children. Parents are generally obligated to make decisions in the child's best interest. When assessing what is in the child's best interests, parents should consider the child's experience of illness, potential for suffering (physical or psychological), and ability to understand and tolerate treatment. Yet, parents may consider a variety of factors other than best interest when making treatment decisions for their children. Moreover, parents may equate the child's best interest with their own (or their family's) and make decisions that, in some situations, will place children at significant risk of serious harm. Clinicians may be reluctant to challenge parents due to a perception that their obligations require treating the family "as a unit." After detailing a case from the author's own practice in clinical ethics, this essay will challenge the view that "family-centered" (as opposed to "patient-centered") care is an appropriate ethical model for pediatric decision-making. Specifically, the physician-patient relationship-or, in this context, the pediatrician-child relationshipought not to be reconceptualized into the pediatrician-parent-child relationship, since the latter perspective potentially misidentifies who the patient is and may inadvertently suggest there is warrant for "treating" the family's suffering at the expense of the child's welfare.

Post-mortem Sperm Retrieval and Posthumous Grandparenthood in the United States and Internationally

“…In this case, the "four topics" approach to clinical ethics-first proposed in 1982 by Albert R. Jonsen, Mark Siegler, and William J. Winslade-is relevant as a guide to navigate the complexity of PMSR. The four topics for organizing ethical reasoning include medical indications, patient preferences, quality of life, and contextual features [33]. Quite simply, PMSR-regardless of consent or spouse-has no medical indications; does not support quality of life; and defies various contextual features, such as allocation of scarce medical resources and economics.…”